Rheumatic

hi geoff.
i am new to the group. what is the tea for???
sharon

Hi Linda
Thanks for the laugh. Will have to share this one with my husband.
Barb

Hi Allison,
Ouch. I can just hear the PA now, saying to the tendon. "So you like pain?"
Hope you don't have too much bother with it.
Martin

In a message dated 5/9/2007 4:17:21 PM Eastern Daylight Time,
schulz@... writes:
For years I subscribe to two health news letters. It is my opinion they are
good.
1. Health Alert. By Dr. Bruce West (subscibe to it for over 12 years)
Health Alert 100 Wilson Rd. # 110, Monterey, Ca 93940
2. Alternatives. By Dr. David Williams ( subscribe to it for over 14
years) Alternatives 7811 Montrose Rd. Potomac,MD 20854
Over the years I subscribed to HSI, Whitaker, Wright, Nana Fuchs and so on.
All are fairly good. But I never stopped subscribing to the two I mentioned
above. You have to be your own judge. I want to mention that they do not
specialize in rheumatic diseases.
Thank you. Even thought it doesn't specialize in rheumatic diseases, I see
a lot on all the websites about inflammation, the immune system, and
autoimmune diseases. That certainly relates. Thanks again for all the
feedback.
Jill
************************************** See what's free at http://www.aol.com.

Hi Fran,
That was very good. Makes you think? You know, after I read it i thought
about it for a long time. I can't make up my mind which one I am. I think i
could be any of them on any given day. From now on though, its the coffee bean
for me. (Yeah, yeah Martin.............We'll see. lol)
Take care,
Martin

Hi Beth! Geoff here.
You wrote:
"Does anyone have any info on a possible correlation between RA and infertility?
I have been putting off starting AP for almost a year now because we've been
trying to conceive. My first child (pre-RA) was conceived in 3 months, now we're
at almost a year of trying for number two."
Our first took over a year. The second took about 3 days. Boy was I miffed! I
was really looking forward to some serious "trying" over an extended period of
time. Nothing to make a guy feel good like a wife who wants a baby. :-)
Your issue's more likely stress. Stress is a physical response to stimuli, be
they physical such as blunt force trauma or surgery, or external such as
arguments or money issues. Regardless, they cause a stress reaction. We often
mischaracterize stress as being "all in your head". It's not. It's in your
head, muscles, organs, circulatory and immune systems, etc. Lowering the stress
reaction produces a chemically and physically friendlier environment for both
"trying" and "getting" pregnant.
Enjoy trying -- the rest will most likely work itself out over time.
Geoff
P.S. If you find you can't let go of a concern about infertility, you can
always have your doctor do some tests. It may be worth it just to allow the
issue to pass away. If you do, remember to test BOTH of you. Things do change,
after all.
Acts 2:39

You might check out their daily e-letter and see if that helps you make a
decision as to whether you want to purchase their monthly newsletter.
http://www.hsibaltimore.com/
There are any number of good alternative health letters out there such as -
Second Opinion by Robert J. Rowan, M.D. www.secondopinionnewsletter.com
Health & Healing by Julian Whitaker, M.D. www.drwhitaker.com
Alternatives by Dr. David Williams - www.drdavidwilliams.com
Nutrition & Healing by Jonathan Wright, M.D. www.tahoma-clinic.com/
I've found good information in all of them.
Ethel

Dear fellow Fort Makers,
My husband has given me permission to share this story with all of you. I too,
make a very large fort in our queen size bed and my husband has been beyond
tolerant. Especially when I have moved him over and all the pillows to the very
edge of his side of the bed. (Oh yes, and there is a cat in the bed also.) One
night his arm kept falling/flopping off the bed for lack of room and he was
forced to put it into his shorts to keep it from flopping about. He shared this
story with some friends who laughed till the tears rolled at the sight of my
husband having to find a place to "hold his arm" because me and the fort ran him
out of space!
Yes, here is to the fort makers! Linda in Poulsbo, Wa.

hi everyone...is there anyone in the group from
scotland? and does anyone know if there is a support
group for people with p/a in my area.,.im 28 and from
airdrie in scotland and finding it quite hard these
days ,,,dont see any light at the end of the
tunnel..would like to get in contact with people my
age with p/a ,,,maybe make me feel a wee bit better xx

Rachel,
you are so welcome - it was nothing. thanks for e-mailing them. i
have been worried about gordon for a long time now and can't wait to
find out how he is.... the last i had heard, things weren't very
optimistic... sadly.
xx karen

Hi Martin,
No, I am just North of Dallas. About an hour from the Oklahoma
boarder. But the weather is crazy. it was 70 degrees over the weekend
and will be in the 20's by tomorrow morning. I am originally from NY
and the winter there was alot worse on my skin. Now it just doesn't
know what to do...it really reacts to drastic changes though.
Pat

I wanted to send this to this group who have made me smile when I really
needed it, to those of you who helped me see the brighter side of things
when I've been down, and to all of you whose friendship I can count on.
Subject: FW: Carrot, Egg and Coffee
A carrot, an egg and a cup of coffee... You will never look at a cup of
coffee the same way again.
A young woman went to her mother and told her about her life and how things
had gotten so hard for her. She did not know how she was
going to make it and wanted to give up. She was tired of fighting and
struggling with all the pain and depression. It seemed as soon as one
problem was solved, a new one arose. Her mother took her to the kitchen.
She filled three pots with water and placed each on the stove on high. Soon
the pots came to a boil. In the first she placed carrots, in the second she
placed eggs, and in the last she placed ground coffee beans. She let them
sit and boil, without saying a word. In about twenty minutes she turned
off the burners. She fished the carrots out and placed them in a bowl. She
pulled the eggs out and placed them in a bowl. Then she ladled the coffee
out and placed it in a bowl.
Turning to her daughter, she asked, "Tell me, what do you see?" "Carrots,
eggs, and coffee," she replied. Her mother brought
her closer and asked her to feel the carrots. She did and noted that they
were soft. The mother then asked the daughter to take an egg
and break it. After pulling off the shell, she observed the hard boiled
egg. Finally, the mother asked the daughter to sip the coffee. The
daughter smiled as she tasted its rich aroma. The daughter then asked,
"What does all this mean?"
Her mother explained that each of these objects had faced the same adversity
.. boiling water . Each reacted differently. The carrot went in
strong, hard, and unrelenting. However, after being subjected to the
boiling water, it softened and became weak. The egg had been fragile. Its
thin outer shell had protected its liquid interior, but after sitting
through the boiling water, its inside became hardened. The ground coffee
beans were unique, however. After they were in the boiling water, they had
changed the water.
'Which are you?" she asked her daughter. "When adversity knocks on your
door, how do you respond? Are you a
carrot, an egg or a coffee bean?" Think of this: Which am I? Am I the
carrot that seems strong, but with pain
and adversity do I wilt and become soft and lose my strength? Am I the egg
that starts with a malleable heart, but changes
with the heat? Did I have a fluid spirit, but after a death, a breakup, a
Illness, financial hardship or some
other trial, have I become hardened and stiff? Does my shell look the same,
but on the inside am I bitter and tough with a
stiff spirit and hardened heart? Or am I like the coffee bean? The bean
actually changes the hot water, the very circumstance that brings the pain.
When the water gets hot, it releases the fragrance and flavor. If you are
like the bean, when things are at their worst, you get better and change
the situation around you. When the hour is the darkest and trials are
their greatest, do you elevate yourself to another level? How do you handle
adversity? Are you a carrot, an egg or a coffee bean?
May you have enough happiness to make you sweet, enough trials to make you
strong, enough sorrow to keep you human and
enough hope to make you happy.
The happiest of people don't necessarily have the best of everything; they
just make the best of what they have.
The brightest future will always be based on a forgotten past; you can't go
forward in life until you let go of your past failures and heartaches.
When you were born, you were crying and everyone around you was smiling.
Live your life so at the end, you're the one who is smiling and everyone
around you is crying.
Sorrow looks back, worry looks around, but FAITH looks up. We are what we
repeatedly do. Excellence, then, is not an act, but a habit.
Just some words to think about this holiday season. Love, Fran

Ow. I dropped a heavy textbook on my foot today at
work, corner down, right into the tendon that controls
the pinkie toe on that foot. It hurts like heck at the
moment, and I expect it to produce a lovely bruise.
But, oh, just wait until my PA figures out that tendon
is the new girl at the dance. (Ow, just thinking about
it...)
- Allison
=====

For Micky and Orin,
Just to pile on what Martin said ~ the information you both send ~ and many
others too ~ fills a bulging folder I have that I share with my doctors AND with
those i love... I've found it helps them understand the rollercoaster aspect of
my life, even when I can't or don't want too...
Thank you again...
Karen (idaho)

I called and talked to the nurse, she said it is very important not
to get pregnant on MTX and you need 3 months to clean your system
out when you stop if you want to try and get pregnant. I asked about
enbrel and she said I couldn't get pregnant on that either and their
is a 6 week withdrawl on it. So I cried and have a prescription
birth control to go get. I will hope that I will go into remission
and maybe be able to try again for another baby before I get to old.
But I have been blessed with children and for now I need to be able
to walk and function for them.
It is very possible that your immune system is taking the
pregnancys. Taking baby asprin while pregnant is supposed to help,
it keeps the blood thin and helps keep the immune system away from
the baby. Of course my doctors don't know this is why I lose the
babies, it is just their educated guess, since I have nothing else
wrong with me or the babies.
Laurie

Hi Deb...
This isn't a good news story, well, at least not in the way you were asking...
I was on mtx and remicade for about 6 months ~ doing well for the most part, but
then came the dreaded flare. My knee literally swelled up in three days to
twice it's size ~ couldn't bend it but an inch or so, so I had to go back on the
meds... I'm sure the stress of preparing two Thanksgiving meals (3000 miles
apart) and the planning of a film festival (with us housing nine house guests)
might have played a little into my fall back into flaresville, BUT... And I was
so enjoying a dirty martini or glass of red wine every now and then... :)
The good news is within two or three days of resuming a remicade treatment and
returning to MTX, the swelling in my knee signifigantly reduced and for the most
part is now back to normal (about 2 weeks later)...
The so-so news is I still am having back pain that has been ongoing off and on
ever since my bad flare (and end to a decade plus long remission) which none of
the meds seem to help. Not sure what this is, if it related to the PA or not,
have a doctor's apptment today to try and begin the discovery process.
Best of luck to you...
Karen (idaho)

Hi Mary
Glad I don't have to shop much. I have been trying to make my gifts but can
only do so much a day. I am hurting again and feel so terribly exhausted.
My husband is going to help me tonight bake a last batch of cookies. He does
all the hard work and I make a good supervisor.
Happy Holidays
Barb

Hi Beth;
Never heard about infertility and RA but there is certainly a big
problem with infertility and Celiac disease.Since so many with rheumatic
diseases are celiac or have celiac syndrome ,you should read
www.celiac.com and preferably get tested.That is easy to do
yourself.Order the test kit from www.enterolab.com send in a stool
sample and they e-mail the results.My doctor says they are the most
reliable of the many labs she has delt with. Lynne

Hi
I remember using a cream called Penetran or Penetran Plus which helped
temporarily on some of my joints, but has been difficult to find in my area.
Barb

I recently tried a a creme that i bought from the local Safeway
pharmacy, its called apr15. after using it for a few days, the
results were nothing short of spectacular. Has anyone else tried
this product, or have even heard of it?

Gloria,
For cardiovascular health and less risk of heart attack, I would go
with 1,000 mg of Omega-3 fatty acids. That would correspond to three
1-gram fish oil capsules per day (one per meal). For example, see
http://www.prnewswire.com/cgi-bin/stories.pl?ACCT=104&STORY=/www/story/11-13-200\
3/0002058014&EDATE
For reduced inflammation from arthritis, I would go with 3,000 mg of
Omega-3 fatty acids. That would correspond to 9 or 10 - gram fish oil
capsules per day (3 per meal). For example, see
http://www.peacehealth.org/kbase/cam/hn-1257001.htm. Many more Pages
like this one.
Sincerely, Harald

Hi Fran -
I DO feel so fortunate to have the good days on my current med. I feared so
much that is would not work, and I am so glad it did! My thoughts and prayers
are with you in hopes that you find the right combination for you!
Sincerely,
Tiffany
P.S. I am 30, so I have a LONG LONG WAY to go with this disease!

I looked the internet to find about Essiac tea. It is
recommended to be taken on empty stomac. I like to try
this tea but is not possible to take it on empty
stomac. First because my stomac is upset after i have
started minocin , second I am fasting 6 hours a day
because i take minocin on empty stomac.
will the tea be affective on full stomac too?
soheila

Hey Barb,
If it helps at all, I've got 3 kids and a huge extended
family.....my Christmas shopping doesn't start until tomorrow. I
haven't even done my cards yet. (I just didn't want to have to use
credit .....too much debt as it is). So........know that you're not
alone. It all gets done somehow...what doesn't........everyone will
survive. Like you, I'm trying to focus on the true meaning...all
the while practicing lots of deep breathing.
Peace,
Mary

Dear Barb, I love it...lol. I don't have special cases, but my husband
knows not to take my pillows. Actually everyone does...lol. One of the few
things I get upset about. I have on that I just have to have to sleep with.
Sounds like a security blanket, doesn't it? OH well, it could be much
worse. ..I'm glad your husband understands. By the way, do you have ones
for Halloween? I'd lose my pillows for sure then.. Take care, Fran
Hi
I even make my pillowcases for the forts I build. Different ones for
different seasons. (lol)
Barb

Hi
I even make my pillowcases for the forts I build. Different ones for
different seasons. (lol)
Barb

The minocin I am taking doesn't look like the photo.
mine is a capsule half cream and half dark gray with
printed RX696 on both half and is not transparent.Why
don't you check with a pharmacist?
soheila

Hi Pat,
I meant to ask but don't think I did. Are you anywhere near Austin? I was
there a couple of years ago and I was amazed at the weather. It could be
freezing one day and the next the temp would be in the high seventies.
Hope you get your retirement money quickly.
Take care,
Martin

Gloria,
Fish oil is better than flaxseed oil. A brief Google search on the
search term FISH OIL vs. FLAX SEED OIL brings up pages like the following:
http://www.mind1st.co.uk/Flax_Seed_Oil_v_Fish_Oil.asp
"Fish oil contains two omega-3 fatty acids known as eicosapentaenoic
acid (EPA) and docosahexaenoic acid (DHA). Flaxseed oil, on the other
hand, is rich in alpha-linolenic acid, which is the parent fatty acid
to DHA and EPA. Although similar in structure, the benefits of
alpha-linolenic acid, EPA, and DHA are not the same. Your body
converts alpha-linolenic acid rapidly into EPA, and more slowly into
DHA. Roughly 11 grams of alpha-linolenic acid are needed to produce
one gram of DHA and EPA. However, other foods in your diet can easily
put the brakes on this conversion process. A diet that's rich in
trans-fatty fatty acids, for instance, will interfere with the
conversion of alpha-linolenic acid into EPA and DHA. Trans-fatty
acids are found in foods such as cookies, some types of margarine,
chips, cakes, and popcorn. When you see hydrogenated oil on the
ingredients label of a food, there are probably some trans-fatty
acids in there somewhere."
http://www.omega-3-fish-oil-guide.com/Fish_oil_vs_flax_seed_oil.html
"...This has led to the fish oil vs flax seed oil debate. You see,
flax seed oil is rich in omega 3's just as fish oils are. So, to
answer the question about flax oil vs fish oil, we need to dig a
little deeper, because there is not always a clear-cut answer...
First, the type of omega 3's vary in each. In flax seed oil, the
omega 3's come in the form of ALA. In fish oils, they come in the
form of DHA and EPA. ALA needs to be converted by the body into DHA
and EPA. This conversion does not always happen easily or smoothly
for people, particularly those people with less than optimal health,
which often includes elderly folk. For this reason, many (including
us here) argue that high quality fish oils are a better source of
omega 3's than flax seed oil because you are getting DHA and EPA
directly without need for conversion."
Sincerely, Harald

Dear Janet, Maybe we should form a support group for fort makers...lol.
Actually, I guess our husbands are the ones who need the support
group...lol. Take care and keep on building those forts...Love, Fran
In a message dated 12/13/2004 5:37:34 AM Eastern Standard Time,
fran@... writes:
Dear Barb, I'm glad I'm not alone in the pillow forts...lol. Take care,
I am a fort person as well. My husband tells everyone how I build this
around me and my friends joke that this is my way of keeping him away at
night.
Janet

Gloria,
No. DHA (docosahexaenoic acid) is one of the essential Omega-3 fatty acids.
Sincerely, Harald

Thanks Rachel,
Hi Frank,
Just a wee note from Scotland. I hope you are keeping well. We are missing
you here. When I joined the group you were one of the first people say hello.
Always full of good advice due to a wealth of medical knowledge and personal
experience. I for one still look on you as the father of the group. Hope you
can eventually get back online dad. lol
Take care,
Martin

Hi Deb,
Like Kathy, I have gotten worse since I came off the MTX. We found
out also that the enbrel wasn't working. I think Kathy is right to
suggest talking to your Rhuemy about it.
Gentle Hugs
Pat

Dear Group, I realize the below comments don't really relate to PA. But we
all have our own doctor stories. I couldn't help but l laugh at these.
Hope I don't offend anyone. Hope the humor helps your day. Love, Fran
Subject: Can you relate to this?
A physician claimed that the following are actual comments made by his

Hey Annie,
I am glad your first dose went well, and that you were able to do
some shopping. I hope that enbrel is your miracle drug and that it
brings much needed relief to you. A positive attutide makes all the
difference in the world. I know I have the mentality of the "little
engine that could"
I think I can
I think I can
I know I can
I know I can
I did it!
I know we all have limitations but having a positive attitude helps
to make the days a little easier for us and those around us. On the
days when the little engine just can't-we know that tomorrow we will
try again.
Pat

I have SD and have started changing my diet. I read a
lot from internet about diet to lower the
inflammation. some says soy products are good, same
says are very bad. some says take whole garin bread ,
some says saty way from bread. I am losing weight and
try to gain weight.
I am very confused , anyone knows a good diet for SD?
ps, I always ate right, no much meatand sugar, took
veg and fruits, no fried and fast food, but I got the
disease.
Thanks
soheila

Dear Nancy, You sound like me with so many loved ones having Fibro. My
daughter has it and so did my best friend. Unfortunately I lost her to the
pain. She couldn't take it and also suffered from migraines for over 15
years that no one seemed to be able to touch. She has been gone just over 4
years now and not a day goes by when I don't miss her like crazy.
I did go through the sleep study, as did my daughter. My daughter's only
showed the lack of the 4th stage of sleep, just like you were saying. She
is on 2 antidepressants as she suffers with depression really bad as well.
For her Zanaflex has been the muscle relaxor that helps her sleep at night.
She has improved so much since using that every night and finally getting
some good quality sleep.
My sleep study showed I do have sleep apnea and I suffer with a low oxygen
level at night, which If I found out so do a lot of the other PA members.
I've had a horrible time using the sleep mask and have basically given up.
I have so many problems and it's just too much to deal with at night. I
feel like a failure on not being able to use it and I know I probably need
it. I'm also supposed to be on oxygen at night and cant' even seem to wear
that. Elavil worked the best for me on getting into the 4th stage of steep
when I first developed Fibro, but I had to stop it since it make me gain too
much weight. Now I take 2 Xanax at bedtime and I normally can get about 4-5
hours of sleep, which anymore is enough I guess. My Fibro seems to be the
worse at night, since the PA takes over in the morning. I know some people
use Ambein, but I"m sort of leery of that drug. For one thing, it doesn't
work for a very long period of time and you can find yourself needing more
and more of it. I think it's fine for a short period of insomnia, but for
long term not that effective. I think your doctor would be best for
suggesting one that works well with your other medications. There are so
many drug interactions you want to be careful on adding a new one until all
your doctors know of your medications.
Good luck Nancy, I hope I have helped just a little bit. I know how bad
fibro can get and how it can take over your life. Keep fighting it and
don't give up searching for something to help you. Everyone is different
and there might be just one little thing that really can improve the quality
of your life. Take care. Love, Fran
Your message made me immediately think of having a sleep study done to see
if you have sleep apnea. In fact, I would contact my doctor and ask him to
refer you for this. Won't hurt a bit, and might help!
Linda in Poulsbo, Wa.
Dear Pat and Fran,
Nancy again. I have pa and fibro as does my mother, and my best friend!
Oh,
we also all have Irritable Bowel Syndrome as people spoke about recently.
I
recently (in the last year) developed bad sleep problem. Wake up every
few
hours. Have trouble staying asleep. Maybe that is why my pain has gotten
worse
and worse. Maybe that's why my upper legs ache. My mom found remeron and
flexeral help her get into 4th stage sleep. I'm on meds for depression so
I
have to figure out with my doctor what I can add to it. Any suggestions
for the
dreaded sleep disorders.

Hi Kelly
Arthrotec is a combination of Diclofenac (Voltaren) and Cytotec ( For Ulcers).
The
cdombination is used to try to prevent gastric ulcer formation. There is a
Arthrotec 75
available in South Africa which is a twice daily dosage. Just rember it should
not be use
by pregnant females a d is known to cause hormonal changes in females....
spotting etc.
RegardsGraham Melamed
406 Pleasant Ways,275 Beach Road,
Sea Point. Cape Town. 8005
South Africa
Phone 27+0214332279 mobile 27+0835644408

Hi Micky:
Thanks for the wonderful explanation of how MTX and Enbrel work.
Barb

Judy, you can do this yourself if you would like by sending a blank email
from the address you wish to unsubscribe to the address below

As I read the report, it says in part, "A new attack against health freedom,
drug safety, and dietary supplements was launched last week by Senator Edward
Kennedy (D-MA) WITH MAJOR SUPPORT FROM MICHAEL ENZI (R-WY)." So this is a
bi-partisan effort.
Ellen

- Perhaps the seeing is tied to what your feeling ~ when intially
researching PA I didn't have all the symptoms I'm facing today...
Glad the info helped you. I think it is true we remember the things
on our minds the most and that is usually what is hurting. I know I
recently learned and absorbed the info on spondylitis because it
became more of an issue for me.
take Care,
Marti

Hi Harald;
Thanks for the info but all fish has vitD also but to a lesser degree
.I am looking for an omega 3 with absolutely no D.Is there any such
animal.I cannot have fish or eggs because of it.I don't have to worry
about getting the D in flour or milk as I amhighly sensitive to them.Do
you know anything about pumpkin or black currant oil as a substitute.
Lynne

Hi Pat,
I'm glad the link helped you. Dr. Starlynl has also written a good
book on fibro and myofacial pain that includes hundreds of
diagrams.It's probably mentioned on her site. Isn't it amazing how
much pain gets referred? I have found the diagrams really helpful in
figuring out where the pain may be originating. I had a great PT who
gently stretched and massaged the myofacial knots out for me. As
Fran said...he became my best friend LOL
Oh...for the person who found tenmnis balls too hard...they advised
me to start with a softer ball and/or start on a bed because it would
soften the pressure. It really does hurt ouch!
take care,
Marti

Hello Everyone,
I haven't been on the board for about a month. I'm trying to catch
up on the postings but it's alot. I was reading about the most
recent Enbrel discussion and figured I'd give my update. I'm happy
to report that for the first time since being diagnosed, my
bloodwork from 2 weeks ago came back 100% perfect. No more anemia
and my SedRate was "1" with 0-20 being normal. When diagnosed I was
38 so I'm just beside myself happy. I'm currently on the new 50mg
Enbrel and 7.5mg of MTX. My doctor said if I continue to feel so
good that there's a good chance of eliminating the MTX next month.
She told me how in general the 2 work best together but there is no
absolutes with the creepy disease so I'm going to push to give it a
try. Worst case, I go back onto the MTX.
I agree with what others said....there's no "better" drug...every
situation/person is different. I'm happy and am feeling blessed but
am also aware that this might not be forever. If at some point the
Enbrel loses it's effectiveness...it's on to other meds. That's why
this board is so great...you never know when you might appreciate
the info on another's drugs/experience.
I've spent the last month taking advantage of my new found health in
an obsessive workout routine (anything to avoid blowing a bigger
whole in my credit card Christmas shopping) and playing with my new
adorable puppy.....a great stress reliever. Did I mention how
adorable she is ?!!?
My only issue is this...the 50mg Enbrel shots...is it just me or are
they much harder to take then the 25mgs? I was giving myself the
25mgs but there's no way I can do the 50mg. There seems to be alot
more resistance going in and out. It also stings quite a bit. I'm
guessing it might be similar to what I've always heard about
Humira? I called Enliven services to give them some feedback but
it's still so new that they hadn't heard alot of positive or
negative. My husband thinks it's b/c the needle cap is rubber vs.
hard plastic...who knows. It's great to take it just once a week
but ....... I do hate it.
OK.....hope all are well.
Mary

Lynne,
http://www.mercola.com/forms/faq/carlsons.htm
Dr. Mercola writes:
"The main difference between cod liver oil and fish oil is that cod
liver oil is high in vitamin D. In warm weather, the sunshine
produces high and usually sufficient levels of vitamin D without any
supplementation necessary; I do not recommend consuming cod liver oil
in the warm weather months or climates, as this can result in an
excess of vitamin D in your system and consequential complications.
Conversely, in cool weather, your body needs more vitamin D, and so I
recommend cod liver oil versus fish oil in cool weather months or climates.
My general rule: Take cod liver oil from autumn to early spring, and
fish oil from late spring through the end of summer. You will need to
adjust your fish oil intake depending on where you live in relation
to the equator. Those who live in the direct vicinity of the equator
will most likely not need to take cod liver oil, as your vitamin D
intake from the sun will be sufficient. If you aren't sure of what
you should take, please have your vitamin D levels tested.
Sincerely, Harald

To our members who were around when Frank was one of our beloved
editors...
I think you all know that Frank fell on hard times and had to leave
our group for a while. I am getting ready to send him a package, and
wanted to let you all know that if you would like to send your well
wishes to Frank, send them to me (rachelviognier@...) and I will
print them out and put them in the envelope for him. I am sure he
would love to hear from you all...
I plan to mail the package on Thursday, so if you get me a message by
then, it will be included!
Speaking of old pals who we haven't heard from in a while, does
anyone recall the name of the nursing home where Gordon was living?
If you do, please let me know, I am really troubled that we haven't
heard from him and that I personally haven't done anything to check
up on him. I would like to contact the nursing home and find out how
he is.
For those of you who are newer to our group, Frank was always a great
source of knowledge and inspiration, and Gordon told wonderful
stories of the simple things in life that helped make this disease
more bearable. While people come and go, these two were a big part
of the group when I was first diagnosed, and they both taught me
different ways to cope and made me feel so welcome here. I know that
they are both missed.
Rachel

Good morning group, while you are at it,could you tell me if there is
such athing ad fish oil that has the vitamin D removed from it.I need
the Omega 3 but cant have any D Lynne G./SD

Can anyone tell me if shark liver oil has the same anti-inflammatory properties
as Carlson's fish oil?
Blessings,
Ruth

Monique,
Thank you for your response ... did you start with a lower dose and slowly
increase it, did you notice the heart racing right from the start or is that
dose related? I am researching it to see if it would be good for my daughter
Samantha who has RA since 2001.
Regards,
Caroline

Your message made me immediately think of having a sleep study done to see if
you have sleep apnea. In fact, I would contact my doctor and ask him to refer
you for this. Won't hurt a bit, and might help!
Linda in Poulsbo, Wa.
Dear Pat and Fran,
Nancy again. I have pa and fibro as does my mother, and my best friend! Oh,
we also all have Irritable Bowel Syndrome as people spoke about recently. I
recently (in the last year) developed bad sleep problem. Wake up every few
hours. Have trouble staying asleep. Maybe that is why my pain has gotten worse
and worse. Maybe that's why my upper legs ache. My mom found remeron and
flexeral help her get into 4th stage sleep. I'm on meds for depression so I
have to figure out with my doctor what I can add to it. Any suggestions for the
dreaded sleep disorders.

Hi Tiffany and Hi Rachel
Enbrel does not treat the cause of PA and neither does MTX. They both treat
the symptoms of PA. The reason MTX works is because it slows down the cells
dividing in the body, this is why it has an effect on inflammation in the
body as it slows down the cascade of inflammation that happens with
auto-immune diseases. This is also the reason that MTX cannot be taken with
people trying for a baby, it will basically slow down the cells dividing,
causing birth defects etc. MTX was first used for cancer because of its
unique ability to slow down cell division, which is why it is used so much
in cancer treatment. Psoriasis is caused by the Keratinocyte cells dividing
too quickly, again this why MTX helps with psoriasis. It was discovered that
people with Cancer who took MTX also had a remission (In some cases) of
their psoriasis this why they linked MTX with Psoriasis. Of course people
could not take the high doses of MTX that are used with Cancer patients, and
that is why the dose for PA/psoriasis is considered safe, if taken under
supervision of your rheumatologist.
On the other hand Enbrel works because it also acts on the inflammation, but
at a lower level than MTX. Here Enbrel is targeting TNF(Tumour neurosis
factor), The reason that this helps us is because TNF is building up in our
bodies and we have too much of the stuff. TNF is a chemical messenger that
is telling our immune system to unleash all types of T cells, Macrophages,
Osteoclasts, mast cells, dendric cells and other cells involved in an immune
response, and are basically sending these cells into battle. TNF is good
because it acts like our alarm and stops invaders and other destructive
forces like cancer through a normal immune response, but for some reason (as
yet undiscovered) our TNF will not go away and the cycle is kept going,
hence why we get continued inflammation. What Enbrel does is stops the TNF
sending so many signals by getting in the way, Enbrel is like a block on TNF
hence why it is called an anti-TNF drug, by doing this it calms down the
inflammation and is one of the reasons it is so good for the inflammation of
our joints.
This is obviously great, but a side effect of this is that TNF is now being
blocked from telling us when something is seriously wrong (Our alarm is not
turned up) So for example if you get a tumour growing in your body the usual
immune response will not be as swift, The reason being is that the TNF is
being quietened down so cannot warn our immune system to attack the tumour.
It also is the same for infections hence why people have to come off Enbrel
and other anti-TNF drugs just so that the immune system responds in the
right way to the threat posed. If you do not come off the Enbrel our immune
system would not be warned and the infection (if serious) could then go on
to overcome our bodies and even KILL us. This is a medical fact and is why
it is so important to see a Dr When taking Enbrel if you have any infections
no matter how minor you may think the infection is.
As for the actual improvements on patients, both MTX and Enbrel have good
effects:-
1 in 3 people who take MTX will find that it improves there PA and for some
it even can put them into medical remission.(meaning that they have no
symptoms of their disease)
1 in 3 people who take Enbrel will also find that it improves there PA, but
on a much quicker time scale, again many people who have taken Enbrel have
found that it has put them into a medical remission.
The major difference is the cost, and the Years that they have been
clinically used in patients with our disease, MTX has been around for over
40 years and has a proven track record in Auto-immune related diseases,
especially in regards to Psoriasis. The figures have not changed over 40
years and it still helps 1 in 3 people taking it, and for these people, they
are quite happy to live with some of the side effects that may occur with
MTX, a lot of these people actually have no side effects. MTX also costs
about 5 pounds per week to use.
Enbrel has been around for about 7 years and so far has also got a proven
track record in managing the pain of our disease and this is also about the
1 in 3 range of people that it helps, again a lot of people on Enbrel have
no side effects at all. However Enbrel costs about 250 pounds a week to
use.
From a medical point of view it makes sense to start with the cheaper option
as there is a 1 in 3 chance that this option will have a good effect on the
disease. The myth doing the rounds is that Enbrel is far superior to MTX
when in fact this is just plainly untrue. It may be slightly better in
figures terms but the percentages are not as big as everybody thinks they
are. Everybody wants the more expensive option because they think that to be
more expensive it must be better, but again to the people that are taking
MTX quite happily, they will never know because they don't need to try the
Enbrel.
As for the risks with cancer and Enbrel this is again under investigation,
There is a 3 times risk of someone taking Enbrel of developing lymphoma than
there is of someone who is not. SOURCE: FDA OCTOBER 2004. In the first
trials with Enbrel, of 5500 patients taking the drug 270 were diagnosed with
lymphoma, this is why it is being closely monitored and I believe a
precautionary label has been added to all anti-TNF drugs as of October 2004.
So as you can see it's a very difficult choice to make when taking any of
these drugs as they both have major side effects if not used and monitored
properly. However for the people that have a positive result and no side
effects it can be life changing.
Micky

hi read the book. didn't find it gave me a lot of info. i got it from
interlibrary loan that way i didn't have to pay. i used up to 25 mg.
but am trying to get off now as it makes my heart race and i don;t feel
too well after taking it. am at 10 mg now. does help my joints though. i
have arthritis.
monique

I assume you are not suggesting that those of us who have more severe
cases of PA than you do and who REQUIRE more potent medication than
you can exist on are not in control of the disease and the drugs we
take. Indeed, the manufacturer of Enbrel has recommended a significantly
higher dosage than you can exist on. Many of us NEED more punch than you
do. Thanks to Humira's punch, I can continue to work as an SVP in a major bank
in NYC, maintain three homes, have a loving partner of 18 years and devote over
30 hours a month to volunteer activities. You see, I like to be in control of
this disease, too, and this is what works for me.
Kathy F.

look up sausage finger-my rhuematologist keeps asking
me if i ever had it.....I think it could be from
reiter's......Deb

Hey Marti,
Thanks for the information (link) you sent. I found some very helpful
information that I somehow hadn't seen before... Perhaps the seeing is tied to
what your feeling ~ when intially researching PA I didn't have all the symptoms
I'm facing today...
Best Wishes,
Karen (idaho)

Hi Ann
Gee, I never thought about that menopause thing, but since my perimenopause
days I started to have trouble.
I have had P since I was a teenager, and my legs and arms were covered, as
well as my scalp. After my early 20's it cleared up except for my elbows and an
occasional spot on my leg. I have nail involvement on my fingers for the past
30 years.
When I reached my late 40's to 50's is when I started to experience problems.
Started with ankle and achilles tendonitis. Now it just jumps wherever and
whenever it wants.
But I have to say YIPPEE, yesterday and today have been really good days.
Hope it stays this way. Although, I see my rheumatologist on Thursday and
she won't get to see it at its' worst. Fortunately, she believes me when I tell
her what has been going on.
Forgive me for ranting on.
Have a great day everyone. Wish I could transmit my good feelings through
the Internet to each and every one of you.
Will tell all what the doctor says on Thursday.
Barb

Hi Gang;
Does anyone know of this supplement.Docs here in Canada are doing
research adding it to antibiotics when people are having to take long
dosage.It seems like it is particularly helpfull for people that are
very prone to bladder infections,most notably parapelegics.I am
wondering if it migh be useful for those of us that have bad yeast
infection due to AP..Lynne G./SD

I am now 62 years old and the first symptoms I had of the arthritis I had
when I was in 7th grade. I really didn't have trouble until my 20's, then
saw the Rheumy but that was when not a lot was known. Went through my 30's
and40's without too much trouble then came the 50's. For the last 7-8 years
have been on lots of medicine, had one knee replacement and currently on
Humira plus a lot of other things. I was on Enbrel for about 4 years. It
worked fairly well for about 3 1/2 of those years. I had had long standing
disease for many years and it worked just fine. I was also on an assortment
of other arthritis meds too, for a time Arava, Methotrexate, plaquinal and
prednisone. I think the main thing that set my disease off was menopause.
I wonder if anyone else has noticed this.
I also wonder if being named Anne or Annie has anything to do with it, there
seems to be a prevalence of people here with that name.
Cheers Anne

Hi Monique,
Thanks for the reply!
I also was in remission until a few months ago. I am not sure the reason I
went into remission because all i was taking was ibuprofin. Hopefully, the
minocin will put work for me. Why is it that some people take 100 mg 3
times a week and some take it once or twice everyday?
When you say lots of probiotic, do you mean 4 to 6 pills per day?
What is marshall protocol?
Good luck!
Thanks,
Jim

Hi Jo Ellen,
Would it be called Psormiceis then? lol
Martin
[Editor's Note: Jo Ellen's and Martin's messages squeaked by the moderator.
Kathy F.]

I wonder if they have a support group for all those little mice that have
psoriasis? Just thinking out loud. {GRIN} Jo Ellen

Except for my elbows, most other sites of P have started with a wound. My
leg was a cat bite, my navel was laproscopic surgery. I don't know about my
scalp though--can't think of anything. My ears started with an infection.
It goes on and on. This article makes perfect sense to me.
Ks Di

hi jim
Probiotics by genestra are very good.
make sure you take lots. i didn't when i started my mino and that may be
why i developed a problem three years later with it - dizziness, nausea,
extreme fatigue. symptoms of yeast i think? an anti-yeast diet is good
to do to. meat fish vegs eggs no dairy no grains no sugars. that will
also help the RA. after 1 year at 100 mg a day i upped to 200 mg a day
and within a few mos was in remission. i had to stop the mino though
after 3 years when i got sick so RA came back. am starting marshall
protocol for it in mid may.
best to you
monique

I don't post a lot, but this article came up today and shows some
hope for our skin!
Sandy
Mice Study Opens Door to Psoriasis Treatment-Study
Sun Dec 12, 1:01 PM ET Health - Reuters
WASHINGTON (Reuters) - Researchers said on Sunday they may have
discovered what causes psoriasis, a common and irritating skin
ailment, and said their findings may open the way to an effective
treatment.

Good luck Annie,
Hope it works for you. I get my first delivery of it tomorrow morning so I
will be on it soon. Maybe we can compare. lol
Again, good luck,
Martin
[Editor's Note: Good luck to both of you! Hope you both go out dancing for New
Year's Eve! Kathy F.]

Kathy,
You sound just like me. I can tell about holistic, homeopath meds,
antidepressants etc within days not months. I also have taken anti
depressants with results lasting only a month or so and then I am back to
square one. I try to tell the psychs this and say I am very abnormal. I also
gain weight fast on ant SSRI and now they finally admit they all slow your
metabolism.
I just got off 9 mos of Ambien. It worked on the 10 mgm strength but I got
up at least once to EAT (LOL). I slept 9 to 10 hours. They said I should do
the 12.5 and I should sleep all nite. It definately did something....I sleep
6 hours and am wide awake. My days are 500 hours long! I was on cymbalta
for 1 1/2 years and just got more depressed in the last 6 months and took
myself off it a month ago. I am still having side effects of withdrawl. Thru
all this the counselors and doctor did not put me on anything to help me get
off. Now they gave me xanax for anxiety (duh).
Ten years ago they wanted me on hormones and even tho I had a hyster I still
felt 6 months pregnant. Said I was unusual (lol). Now I am on them and feel
I must need them since I feel ok. I started having MAJOR hot flashes at age
60 and had my hyster when I was 40.
I would love to talk to you on a regular basis to chat and compare notes. If
you want to my email is
cookee1@...
cooky
AP 10 years

Annie, Today is the day, I sure hope it works well for you. It did wonders for
me. I started it on Friday and by Monday I was playing in the yard with my
flowers. I could even pick up the pots of dirt. Like I said it was and is
wonderful for me. Please let us know how it works for you. Think positive.
Elaine

Sue, I hope you are feeling good and everything went well after surgery. Really
I hope you are running around and pain free. I have to ask about your eyes. Did
you have to do the steroid drops and did it work? Just thinking about you.
Elaine

Hi Cooky,
My wife is weaning off prednisone ( three years) and is currently at 6
mg/day. Her problem is lack
of energy. You mentioned an OTC adrenal product which seemed to have
helped you.
Could you let us know what product you took. There are many, but she
would rather take something
that has had a positive effect with other users. Seller's descriptions
are always good and one can't tell
the good ones from the others.
Thanks for you help.
Robert and Marianne

Hi Nancy,
I am sorry you are having so much pain. My Rhuemy feels the sleep
has to be good in order for the body to heal. I still don't sleep
well. I take ambien to help get to sleep, and trazadone (sp?) to help
stay asleep. trazadone is an anti depressant but so far it isn't
doing much. Right now I am on the minimal dose so he said to raise
the dose up to three a night. So I will probably raise it tonight.I
was on soma (muscle relaxer) but he changed it. I also take vicodin
at night. I know there is a definite connection between sleep and
fibro. We don't reach the stage 3 and 4 when the healing process
occurs in the body. I hope this helps a little.
Pat

Hi everyone,
Thanks for all your help on Pa and fibro. I also belong to the fibro

Sandy, I take Garden of Life Cod Fish oil...buy it at Wild Oats..it is
pharmaceutically distilled, so no pcbs or mercury...comes in capsules or
liquid..I do liquid...

Hi Annie
I wish you well on your first injection and hope it works. I am still on
sulfasalazine and have to go through a multiple of steps because of my insurance
company.
Will be thinking of you and let us know how you do.
Barb

Hi Ronnie,
Your theory holds true for me..I've had the pa for 37 years.
anyone with longstanding pa find relief with enbrel? or vice versa?
newly diagnosd and it didn't work? Unforunatly, this one might be
hard to figure out since insurance companies require failure of
other treatments first.
Take Care,
Marti

Rhonda,
I have never had locking joints but my mother has had fingers that lock up,
especially in the morning. She even had surgury on one which "cured" the
problem. She is probably getting off remicade due to weeeks of chronic
infections
like bronchitis and sinusitis. Glad you're a little better.
Warmly,
Nancy

Dear Pat and Fran,
Nancy again. I have pa and fibro as does my mother, and my best friend! Oh,
we also all have Irritable Bowel Syndrome as people spoke about recently. I
recently (in the last year) developed bad sleep problem. Wake up every few
hours. Have trouble staying asleep. Maybe that is why my pain has gotten worse
and worse. Maybe that's why my upper legs ache. My mom found remeron and
flexeral help her get into 4th stage sleep. I'm on meds for depression so I
have to figure out with my doctor what I can add to it. Any suggestions for the
dreaded sleep disorders.
Hope your pain is not too bad.

From a nursing point of view, when they said not to take Vioxx anymore that
put up a red flag to me on Celebrex and Bextra which are also cox-2 and all
work the same way. I decided to go with Naprasyn. I know that has been
around quite a while.
Janet

hi ethel
have been trying this address you gave me and it is the one that keeps
bouncing back. has anyone else told you your e-mail is bouncing back?
thanks
monique

Hi arie,
I typed: "psoriatic arthritis and heart and lung" into google and
came up wih 694 matching sites. Many of them talked about a heart
valve problem associated with pa. I know when I was at Mayos they
checked me for this. This would give you a starting point. Sorry I
don't have time to wade through them all.
best...hope your heart prob can be figured out!
Marti

Hi Tom,
I really enjoyed hearing from you this morning especially since you had such
good things to report regarding your usage of Enbrel. I just can't even imaging
snow-boarding! Good for you!
I'm afraid I am past the point of recovering that well, but I will take any
amount of response I can get from the Enbrel since I am becomming more and more
crippled in my hip and knee, ankle and wrist joints..not to mention fingers and
toes...lol, might as well laugh as cry huh? The psoriasis is eating me alive it
seems so any relief from it will be such a welcomed comfort...only 24 hours
until my first injection. Im happy but kind of scared too. :-)) Anyway,
thanks for your kind post, and keep feeling well!
Hugs, Annie

Hi arie,
Here is a good general article on pa that mentions inflamation of the
lung lining and rarely, the aorta. l'll see if I can find more on it.
http://www.med.miami.edu/glossary/art.asp?articlekey=460
good luck,
Marti

Hi,
I, too, am sorry to hear of your pain, Pat. I love all of Fran's
suggestions. I use the accupressure :pushing on a trigger point and
it does seem to help. So many times we are told not to take naps but
I find rest to be a big help.
I agree they just don't know enough about fibro let alone how fibro
and pa interact. I believe at fmaware.org there is a section on
multiple illnesses. Seems people with lupus, ra, and MS get fibro at
a higher frquency too. Makes you wonder.
thinking of you,
Marti

Hi Everyone,
My name is Betsy and i got diagnosed after 3 months of my upset cause i had no
help or anyone to take me to the doctor. I'm only 19 and my mother was murdered
when i was 2 and my dad left me and my brother to be raised by my grandma and
grandpa. My grandpa died when i was 9 and my grandma recently died last year. 6
months after she passed away my onset came on highly severe. Not able to move...
at one point i was bed ridden for a month. every doctor i went to said that i
had a viral syndrome in my joints and one of the doctors even thought that i was
faking that i could barely walk. It was a horibbe 3 months. Then my uncle came
down from houston to visit me in corpus christi and he saw the condition that i
was in. So he took me in and now i live with him in Houston. I have a
rheumatologist that i've only visited once so far and right now i'm taking
methatrexate and i'm doing ok. God answers all prayer people. This life changing
experience has actually brought me closer
to God and changed the way that i look at things. I dont take walking for
granted anymore.. every step i take is a miracle to me now. In a way RA made my
life more beautiful. I use to think that i was going to rot away because i had
no mother or father to take care of me but i was wrong... My Lord was watching
over me and he will every day of my life.
God bless you
all,
Betsy
Caballero
Rosalind Gittings <rosalig@...
Hi Everyone,
Ashley, it's great that you're writing your story for us. The part that really
jumped out at
me was that "the only thing you know that really helps is to keep smiling". That
reminded
me of my rheumatoid journey with its attendant stress and depression, and then
the
discovery of how much a positive attitude helps with actually making life happy
even in the
midst of pain and fatigue.
I wonder how many others of our group have found this. We talk about all the
practical
solutions we try re medication and we talk about our desperation and exhaustion,
and it's
really great to be able to express these feelings freely and know we're heard
and
understood. But we don't seem to talk about the other ways of dealing with the
day to day
challenges we all have which might be helpful, and above all, encouraging, for
others in
the group. It's so easy to feel discouraged, especially when we have to do all
the research,
tell our doctors what we want to try, battle with reluctant rheumies, etc and
all while we're
unwell!
I actually got to a point last year before I'd started the mino, when I felt
grateful for the
disease because it had forced me to change my whole way of thinking, forced me
to
search out books and tapes (and people) which showed me that the most important
thing
in life is what's happening on the inside, in my heart and mind, in my spirit,
and that every
day I need to be vigilant about not letting my thoughts fasten on the
difficulties in my life
but look for the good things and above all, be grateful!
It's made such a difference to my attitude (by nature I'm a pessemist and have
been all my
life) and despite everything I now feel happy (or at least, contented) most of
the time (for
the first time in my life). This has been lifechanging for me. I know most of
you are in the
US where all the famous positive thinkers and motivators have come from. Who
else is
doing this practice and what effects has it had on any of you?
Keep smiling and keep hopeful,
Ros

Marti...I had relief from the first injection. They really won't say this
but Enbrel seems to be the most effective in people who do not have long
standing disease. That is one reason I urge people to try it as a first
line treatment. Generally it seems the longer you have had the disease the
less effective Enbrel seems to be. Not always though and everyone is
different. I sincerely hope Enbrel works for you but if you don't get some
relief in five months you might want to consider another biologic drug. I
suspect that the 40-50% of people that Enbrel is not effective for those
that have longstanding PA. But there is no way to really prove this and it
would cut into their sales.

You might want to check with a Compounding Pharmacy. All of the big cities
have them. They do exactly what you said. They grind up things into
creams. One of the very popular things they do is grind ibuprophen into a
topical cream. It's kind of like super aspercream. The advantage is a
localized dose and you don't risk stomach bleeding.

Thank you Fran,
yes, the knee pain that just won't go away. I will try the tight
bandage. Does it sometimes go right into your hip. Thank you for all
the advice. We are trying to get the sleep controlled, and I will try
more pillows. Right now he only has me on the vicodin but when I see
him I will ask about the xanex. I do sometimes give into the nap but
not often because I am afraid that it intfers with nighttime sleep.
Sometimes I just can't help it and 30 minutes makes me feel
better.you have been so supportive.
Thanks again
Pat

Dear Pat, I just hate to hear that you are in this much pain, from PA or
from Fibro. Both can be just devastating alone, but together they can be a
real nightmare. I started thinking of some of my "tricks" or things I've
done in the past to help with Fibro when it's really bad and thought maybe
some of these might help you. They are only some things that have helped me
and I cant' verify that they have helped anyone else. Even my daughter and
I are very different on how we respond to treatment. Anyway, they can't
hurt, as far as I'm concerned.
1. I sleep with tons of pillows. My husband accuses me of building a fort
every night (to keep him out...no boys allowed I guess...lol). Basically I
arrange them in a upside down V shape. I've found that this gives my neck,
shoulders and arms a lot of support. I also use pillows on my sides with
helps with the rib pain. It's a pain to arrange them every night, but it
makes such a big difference to me. The Princess and the Pea story really
does apply to me where Fibro is concerned.
2. When the pain is really bad, I try to take a nap. Sometimes just a small
amount of sleep will relax the muscles enough to stop the pain.
3. One drug that has probably helped me the most, is Xanax. Doctors hate to
prescribe it since it's so addicting. I probably would have a hard time not
taking it now since I"ve been on it for almost 10 years. I do go from 1
pill a day to sometimes 3, so the amount all depends on the pain. I've
found it relaxes me without knocking me out, unless I take 2 at a time. If
you can get your doctor to write even a low dose for a short time, it might
be worth it just to see if it does help you. Some doctors realize how
important staying calm can be with fibro, and others just worry about the
addicting factor. All I know is it has made a huge difference in my life.
4. When I have a really bad knot or pain trigger spot... I use my thumb, if
they aren't hurting too much from PA..lol, and apply pressure. You start
out slowly and build up until you are pushing as hard as you can stand it.
Sometimes when you let go or even before, you can feel the knot just break
up. I've found that even if it doesn't break, the pain is less after the
"painful pushing". Why it works I have no idea, maybe it just feels better
because I'm not pushing on the sore spot anymore, but all in all it really
does seem to stop the burning pain for awhile.
5. I go from heat to ice to heat to ice. I do that for about 30 minutes
also when a spot is really bad.
6. One spot that is really hard to treat with my daughter and myself is the
area right below or over you knees. It just seems to ache like crazy and
nothing really seems to work. We found that if you can put a tight knee
brace or ace bandage on, it helps tremendously with the pain. I think it
either supports the muscle, or again does something with applying pressure
to the whole area. I couldn't tell you how many nights my daughter and I
would see who could find the knee pads first..lol. You want the tight ones,
as long as you are comfortable. Right now they don't help me too much
because of the edema in my legs, from the PA. But my daughter used to wear
them to school under her jeans all the time.
7. Meditation or visualization really helps too. It might just be you are
finally relaxing for a few minutes, but I've found 15 minutes of quiet time,
lying down or in the recliner can really help make a difference.
8. Avoid using your arms too far from your body. I know that sounds
strange, but say cleaning out a tall cabinet will just kill you in the long
run. Sometimes just holding the hair dryer is way too much. You just learn
to work with your arms close to your body, or you support them all the time
while you are doing something..
9. Getting a good night's sleep is really important. One thing I've found
is most fibro people have a sleep disorder of some type. The muscles never
completely relax and you wake up feeling worse than when you went to bed. I
was doing pretty well in this area until I went on prednisone and now Arava.
As much as Arava has helped me with PA, and the prednisone with the
inflammation, they both cause really bad insomnia. Now I'm lucky to get 4-5
hours a night, but before that I always tried to get at least 8 and 10 was
even better.
Well Pat, that's all I can think of right now. I hope one of these helps
you deal with your pain today. Just remember it can get better. When it's
bad day after day, you start to lose hope and think the pain will never end.
Once you get the medications and a routine down, it will improve. Just hang
in there. Let me know if I can help in anyway. Take care. Love, Fran

Thanks Fran and Marti for responding so quickly to my question on PA
and Fibro. I will check out all the websites you listed and if I find
out anything new I will let you know. My last Rhumey appt got my
husband and I wondering alot more about connections between the two
diseases. You can normally find a lot of info on fibro or Pa but not
the combination. My Rhuemy is concerned about the fibro right now. He
is trying to get me on Remicaide for the PA because the enbrel has
stopped working for me. He said the PA is severe. But his main focus
is the Fibro because the pain is getting worse and he feels it is
mostly soft tissue pain. I asked him about cortisone shots for my
thumbs because the osteo is so bad in my thumbs. His response was
that the thumbs are degenerative like my spine and is just one local
place,and that the pain I am having is so widespread that a shot in
my thumb won't do a thing for pain. I am on a antidepressant for
sleep and ambien and vicodin, I am also on Mobic and enbrel until the
remicaide gets approved.
I know fibro isn't supposed to cause permenant damage to the muscles,
but we can't help but wonder since the two diseases have progressed
so rapidly whether one effect the other and how much. I agree with
you Fran, despite the medical authorties saying fibro doesn't get
worse I have to say that it most definitely can. My pain is steady. I
think the times I just can't move are due to the PA flaring more.
They say fibro pain waxes and wanes but I haven't experienced the
waning part at all.
I know I am rambling on here, I am sorry about that. It is just all
so confusing and your feedback was very helpful. Like I said if I
find out anything new I will let you know. I think the medical
community still doesn't know that much about fibro, therefore really
doesn't know much about PA and Fibro. Fran, I am sorry that you got
the disease when there was even less info on it. It must have been
extremely frustrating. I am also sad that your daughter has it so
bad.She is lucky to have you on her side though.
Thanks again
Pat

Ron -
My ear canals is where is started in my teens, and my derm kept telling my
parents that it was hairspray dried up! That is SO INSANE! It took until my
early 20's for a Derm to finally tell me that it was Psoriasis, but he did NOT
doubt that's what it was... even in my ear canals. I can't say Enbrel has
taken it totally away, but it has helped.
Tiffany
In a message dated 12/11/2004 8:48:44 PM Central Standard Time,
ronevans@... writes:
get it in my ear canals. The Ear guy said it isn't possible because it is
different tissue. In reality they don't know. When I went on Enbrel the
problem went away. I had sinus surgery years ago. In retrospect, I wonder
how much of it was actually related to PA.

FUI my Rhumatologist who has done several studies with Methotrexate told
me it is 6 months
before it starts to work. I only went on it for 6 weeks as I got
serious shingles from it on the 6th week and I had then
found a doctor who would do AP and that was the direction I personally
wanted to go.
Lucy

Hey all,
Been about 2 years since I was last reading and posting here. Just a note
on my background before my question...
I am a 38 year old professional juggler with minimal P. (20 years) and mild
PA. Have been diagnosed with the PA for about 5 years. Started on
Piroxicam and then switched to controlling my PA by doing Dr. Pagano's diet.
Hate it, but find it extremely helpful.
My question is:
While recently performing internationally, I came across two medications in
a Mexican Pharmacy. The 'expat' American pharmasist highly recommended E45
Cream from Crookes Healthcare in the UK for P, and Cofenac Gel (Diclofenac
Diethylammonium Gel) from Cipla LTD in India for PA. Neither is steriodal.
Does anyone here have any info or experiences with either of these? I
believe I am aware of some of the issues and risks of taking meds that are
not approved by the US gov't. Nor am I eager to take anything without
checking with my Doctors although they would agree I know more about diet
and PA than they do. I hardly take any meds now at all....prefer to avoid
them.
Does anyone here know anything about the safety or effectiveness of these?
The Cofenac Gel is supposed to be made up of NSAID's that are crushed into a
cream. I tried it only once and felt noticable relief in about 10 minutes.
Wanted to get info on it before using it again.
I have not tried the Psorsis Cream yet. But the pharmasist swore that there
would be no rebound, and that I would know in a week or so of regular use if
it would be helpful to me.
What say you all?
Best Regards,
Michael Rosman

where are u? what state
Sltfain@... wrote: Are any of you on ORAL clindamycin? If so, what
dosage and are you having
positive results? I am in a place where there is NO ONE to give the clindy
iv's to me. Thanks. Sandra
************************************** See what's free at http://www.aol.com.

Hi all,
Those of you taking enbrel know that the drug company is required to
call us every so often to keep records for the FDA on efficacy ,
infection rate, etc. I got a call from them today. The nurse was
helpful...when I reported no improvement with my psoriasis she told
me that the dosing for the skin is different than for the joints.
They recommend 50mg 2x a week for 3 months and then drop back to the
25 mg 2x a week. Since a rheum prescribed it for me I didn't get this
dosing and will look into it. When I reported no improvement with the
joints she told me they usually wait for 5 months to judge that one..
(I have been taking it 4 months)
while I had her on the phone I asked about the commercial that Susie
saw. She said it meant that enbrel has now been tested on a group of
Ra patients for five years and continues to work for some of them for
that length of time. I know Susie is recoverig from hip surgery right
now and could probably care less about it at the moment...just didn't
want to forget to write it. If anyone is keeping in touch with her
could you let her know. Does anyone know how she is doing?
Ronnie...that is really interestng about the docs prescribing it
short term and for other auto-immune diseses. Thanks for the info.
sounds like you are way ahead of me...I haven't gotten any of the
50mg premixed vials yet.I just wish it was the miracle for me that it
is for you.
take care all,
Marti

Good luck with the Enbrel...
I have been on it a little over 3 months now and it is a miracle drug for me. I
do two doses
a week and was aprehensive about injecting myself too. Now it is just part of my
morning
routine twice a week.... no big deal.
Did I mention that I have gone from the worst arthritis flare I have ever
experienced to
being able to snowboard? I do not know what I would do without the Enbrel.
Tom in Anchorage, with snow...

Hi Monique,I am still here.We had phone line problems. Lynne G

I had serious problem with P in my ears. It turned into a vicious cycle of
itching, digging, infections, getting it cleared up and then we would start
over again. I'd have infections a couple of times a month. I would dig at
them in my sleep. At work, one of my friends was always screaming at me to
get my fingers out of my ears. Also, if I took some pain meds they would
make me itch and my ears would drive me nuts. Then I would start digging
again and it would all start over. My GP told me that the skin is so thin
in the ears that it is not a good idea to put our P meds in the ear. If
things got bad, I would put Davonex in them for a few days, but it wouldn't
help in the long run and things would just continue. I finally decided to
break the rules; every morning when getting ready for the day, I'd take a
Qtip and put a small amount of Davonex in my ears. I did this for a couple
of weeks, even if the sores weren't bad at the time. They cleared up and
the sores haven't returned. It's been a good 6 months now, and this is a
good thing.
Becky

In response to your question about using sulfasalazine. After only being on
it for 10 days, I developed a respiratory and urinary infection. At that
point I stopped taking it and it took me over a month to recover. No more of
it!
RJ

Hi Jerre
Thanks for the laugh. Have to send this on to my husband.
Sure makes the pain lighter when we can laugh a bit.
Have a good night.
Barb

Jon, hi
I can't answer your question positively. I can only tell you about what
happened to me.
It all started in my wrists and fingers. My wrists are normal even tho I
thought they would be bent forever. My thumbs were always inflamed and the
sites OK. My finger drifted and it still drifts under stress. I do not have
much strength in hands or wrists.
My right ankle is usable but bends in. Under stress it tends to bend more.
They did a cortisone shot when there was a bad inflamation.
My toe that I hurt badly during a flare now has osteo. One of the other toes
I felt the tendon rupture and it mostly has attatched itself to the next
toe. It does not move on its own. I have two metatarsals I fractured when I
was not in a flare and they get achy under stress.
I can use all the areas that I never thought I would be able to use but they
are weak(like hands, fingers, wrists, ankles).
I also had major inflamation in each shoulder at different times. These
flares lasted at least 2 years each. There is no pain but the right shoulder
turns in a little.
I feel I am very lucky to be able to do all I do. I hope your wife finds
after she is on ap for many years , the area she is worried about is usable.
cooky
RA and fibro
ap 10 years with clindy IV's also

Enbrel is used like that all of the time. It is even used off label for
other auto-immune problems such as auto-immune related hearing loss.
Sometimes a flare is caused by a trigger event that puts your immune system
into overdrive. Attenuating it short term until it settles down can keep
you from having permanent damage. RDs don't prescribe Enbrel a lot because
of the insurance company restrictions and the price of it. These companies
usually require you to fail two mainstream treatments before they will cover
it. Really, if it works for you it is magic. I believe it should be the
first thing they try, even short term, even before steroids. It is the most
statistically effective drug they have and it causes documented remissions.
Why wait until the damage is already done? They should hit this disease
hard in the beginning with the most effective treatment they have.

Hi Pat,
I can sure relate to your predicament. Mine also seems to get worse.
I'm sorry you are also experiencing so much pain.As you know from
this board,pa can affect the heart and lungs...but rarely. No doubt
fibro and pa can both affect all the soft tisuue surrounding both
organs. I have come to view my fibro as a secondery illness to my
pa. When the pa flares the fibro flares right along side of it...if
I can control the pa the fibro doesn't go away but does settle down.
I'm sure it isn't neccesarily the same for all of us...nothing seems
to be.
Here are some sites to start your research..I know Fran has some
great ones too:
www.sover.net/~devstar/
www.fmaware.org
www.myalgia.com
good luck and hope you will let us know what you learn...I have not
been keeping up with any fibro info lately and am really interested!
take Care,
Marti